Frequently Asked (But Unanswered) Questions About E-patients

As I’ve written before, I love questions. It’s an honor to be handed someone’s nascent idea and to help them shape it (which is what I think a question really is). But this time I’m asking for YOUR input.

These excellent questions were sent to me by Liav Hertsman and his colleagues at Tel Aviv University, who hoped that I had all the answers.

If only.

I can tackle the first one on my own, but I need help with the others. If you have any tips to share — observations, journal articles, researchers interested in similar questions — please add them in the comments.

1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

Dear susannah,
First, I would like to thank you for the opportunity to gain the group’s insights about these crucial questions to our research. we are conducting a seven month research project at Tel Aviv Uni., Israel, regarding e-patients, and are very interested in your (readers ad ncontributors to the website) insights about these issues.
Second, wehn you mention the e-patients, do you mean the person seeking the info. or the person that the info. is for? As most researhes argue that over 50% of the info. is gathered by the surfer for someone else who is infact the patient.

Pew Internet uses the term “e-patient” to describe any internet user (age 18+) who has looked online for information about any of the health topics we name on our survey. Another caveat: our surveys are limited to the U.S.

So that could be someone who looks on behalf of themselves OR someone else. Indeed, we find that when we ask people about the “last time” they looked online for health info, half say it was on behalf of someone else (asking about the “last time” hopefully is a recent enough occasion that it prompts an accurate answer).

I can share a few observations having moderated the SharingStrength | FortesEnsemble community of breast cancer e-patients over the past three years.

#2. Users on our site seem to need and search for medical information most at the time of diagnosis.

Community support is sought at several points in the continuum: at time of diagnosis, to help treatment decision-making, during treatment to help cope with side effects and as the end of treatment approaches. Many stay in touch or return to the community as mentors.

#6. Moderation on our community forums includes sourcing professional resources for users to cross-check with UGC.

reveals that citizens who use the email to communicate with health system and other ICT applications in relation to their health (so they can be considered as e-patients) are more likely to:

– be an advanced ICT or networked citizen (so access, use and asses ICT in daily live)
– demand health care services
– to be empowered

Age is in the model but it is not significant because elders are more likely to be patients but more unlikely to be advanced ICT or networked citizens.

We have characterized e-readiness/awareness to Network Society following A typology of information and communication technology users developed by Horrigan, John B. from Pew Internet and American Life Project. It has to be mentioned that our results

highlighted that Excluded, Disconnected and Basic ICT users are not taking advance of ICT in relation with their health, although they are more likely to be in worse health status than the Advanced and Networked citizens due to their socio-economic profile. Therefore ICT could generate new barriers for health for those who really need health services. On the other hand, the new generation of intensive health care demand will be different (our “digital natives”) will become intensive health care users in the next decades so health systems should be ready for them. So here goes my questions:

– What are the drivers and the inhibitors to become an e-patient?

– Could a typology of e-patient be developed following a multivariate statistic analysis?

Congratulations for your wonderful work and for open your research process to the Community!

We develop the typology (access, uses and assessment of ICT following and adapting) your questionnaire and then we make more questions about Health status, Health care demand, Health Communication and Participative Medicine/autonomy/empowerment and Doctor-patient relationship. Therefore we can use the typology-cluster for eHealth, eGovernment, eLearning or any other eServices.

I hope my questions will be useful to generate new items for your future surveys.

A pioneering group that is starting with the experience of breast cancer patients is Wanda Pratt’s iMed research group at University of Washington. Questions 5-7, 10 particularly may draw conclusions from some of their work. Research that is going on there involves locating patient expertise (Andrea Civan-Hartzler: when patients feel like the need to seek out solutions from someone who is going through a similar experience), recruiting help through online media in a such a way that it is not burdensome to either party (Meredith Skeels), and capturing unanchored work that might provide them with bits of information from multiple places (Pedja Klasjna)

I have seen a number of research studies commissioned by various leading health sites supported by internal traffic that shows that the #1 activity for users of health sites is to check symptoms. People wake up, feel poor, and have no idea what is wrong or what to do. They used to go to the doc (or ER) and today they go online first.

I would suggest that in order to answer the above question, you first need to answer a more fundamental question:

What are the drivers that pre-dispose one to “actively seek” or “avoid seeking” health information in the first place?

Health Behavior Theory provides us with insights. The Elaboration Likelihood Model posits that people are more likely to become “more cognitively engaged” in things (like health) that they are interested in and find personally relevant.

From my prior research experience, about 2/3 of adults place a moderate to high value/priority on their personal health. These people tend to believe that they are in control of their own health. This is called an internal locus of control. The remaining third tend to place a lower value of their health. Many of these people tend to believe that their health is a function of the environment, genetics, something outside their control. This is referred to as an external locus of control.

In order therefore for one to become an e-patient it follows that they must first place a higher value of their own personal health and be internally motivated to sustain/improve their health.

The most active health information seekers also tend to be a bit more distrustful of medical providers.

What one must keep in mind is that a “cognitively engaged” health information seeker actively uses all health information sources. Some of my work preceeds the “web.” In the pre-internet days, these active health information seekers relied on doctors, TV, magazine articles, etc. for their health information.

My team and I are from the Tel Aviv University Recanati School of Business. This project is a research project in collaboration with the Technische University of Munich, as part of out MBA studies, focusing on a various business arenas.
Our team’s focus is the online health information arena, with a focus on the United States e-patients.

Aspects of the digital ecosystem:
E-patients trust more and benefit more from patient-generated-content on forums, media- and publishing house – websites with different social media elements and functions. They do not trust and use the healthcare stakeholders digital supply.

Impact of digital healthcare online within the Chronic´s Typology:

81% pose more or different questions to the gp
80% can better decide for or against a treatment
72% ca better life with their disease
45% want another medication from their gp
31% communicate with their health insurance different now

This survey will probably soon be repeated in other central european countries.

Alexander,
What amazes me and maybe even scares me, is the e-patient typology you give: “Chronics..Caregiver..Interested”.
As caregivers are no patients, nor are “interested” according to the definition you use, the only e-patients are chronic patients.
IMHO you are leaving out the majority of patients that have to be included. In my view, any patient, chronic or not, who spent time exploring info about his condition to be able to engage in a discussion with his providers and to assume a role in his care/cure path is an e-patient.

2. Caregivers are not automatically healthy or only interested but they do care and decide on treatment, medication questions etc on behalf of the person they care and who is maybe too old, handycaped or less digital literal, so they are even more than opinion leaders in that.

3. The (only) Interested ones are by my definition and as a helpful separation not having a chronic diseas but simly just interested in all these contents and topic – i do see them also relevant in terms of public health audiences, future topics for them, gaining digital healthcare abilitites etc.

Since this was self-selected, I’d especially like to know what kind of site it was.

In the sentence about patient-generated content, I got lost. You say “E-patients trust more and benefit more from patient-generated-content on forums, media- and publishing house – websites with different social media elements and functions.” Are you saying that they trust pt-generated content on forums, and they also trust websites with social media elements? Or are you mainly saying that they trust platforms where people can discuss things, instead of read-only?

(@Susannah, i may write an english article of all that… sorry… first things first =) )

1. Global E-Patient Research sais and proofed that patient stories / in their language / with their relevance / with their social world view etc. helps other e-patients best; and they trust and benefit from that most, sometimes more than a gp talk

2. Concerning my survey i tried to proof that for GER on 15 most visited healthcare websites and it came out that there is a user-traffic + “benefit perceived” + “trust mostly” correlation for the following:
The more interactional and social media elements a website has, the more traffic it has and the more e-patients benefit and trust the website. Second result: all classical GER healthcare system stakeholder´s website do yet not have these elements, thus have the weakest points in user-traffic, trust and benefit evaluation (pharma+hospital+healthplan+government sites etc).
I call them the healthcare-system internal sites in comparison with healthcare-system external sites from third parties, health 2.0 startups, media-houses, private e-patient forums etc. who win the race – and as a result we can define here some disruptive moments.

The best is, that Susannah may upload here some slides of me i did present at some EU based congresses on that! Maybe the whole presentation?

It’s really amazing to see so many researchers patients post here to share their findings and opinions. Suzannah, you are right all this conversation thread deserves a webpage by itself.

I have read Lodewijk’s blog post and was moved. It made me question myself why now I am an e-patient and in the 80s just a curious, willing to learn and understand patient. A patient thad wanted to challenge dreadful diagnosis. It is not internet that made me seek health info about yes, first symptoms, then therapies, then drugs, then interaction with other patients. I sought the info in libraries, in books, magazines, press. Today still it is not only the internet that is the source of savvy patients, it only facilitates search, while a good lot is done in hard copy.

As the topic is of top interest for me and the Greek e-community and on the other hand it is not convenient to answer the questions here, I will right a post for my blog and come back to put a link here.

I sincerely think there is (should be ) little difference between the then curious patient who gathered information and knowledge (expert patient?) and today’s e-patient. But the hype has attacked, as so often these days. As I said here: http://blog.icmcc.org/2010/05/12/me-patient/#comment-138639 e-patient has become a label and I don’t know if that is so positive.

Craig mentions my research, which has been funded by foundation grants, as well as the research conducted under the aegis of the National Cancer Institute. Who pays for the research in other countries? What role does that play in how the work gets done?

I’m not sure if pregnancy is on anyone’s radar for this project, but a 2007 Swedish study tells us that women most often use the internet at the beginning of pregnancy (e.g., once a diagnosis is made) and then the intensity of internet use picks up again in late pregnancy. The study is a few years old, but that is certainly consistent with how I think pregnant women still are using the internet. Also, user-generated content, specifically birth stories and birth videos, are becoming a cornerstone of childbirth preparation. You wouldn’t believe the number of views the childbirth videos on YouTube have(apparently 7.6 million people want to know what it looks like to give birth squatting!) and Google returns nearly a million results for a search for “birth stories”.

you are all welcome to contribute to the E-Patient and Health 2.0 / Medicine 2.0 picture (e.g. drivers, catalytic environmets vs. barriers and inhibitors of implementation… major not yet from me mentioned innovation trajectories (other forms of major tools/applications etc).

I am planning a Health 2.0 Book but from and for a more EU based perspective covering contributions from and for all relevant stakeholders, although i see more innovation happening on your side of the ocean.

merci!
Alexander

Liav Hertsman
on May 19, 2010 at 4:28 am

Here are some interesting findings from our survey, focused on some 225 american women, 45-64 years old, which somewhat correspond with Alexander’s & others’ research findings:
1. 12% of women are interested only in professional (authoritative) information, all the rest are interested in UGC.
2. 9% of women never read UGC, so from that stems that some of those who declare they aren’t interested still read it…
3. 70% of women are interested in experts’ reviews but only 56% are interested in other people experience (UGC).
So, the dominance of UGC is still as second best, after experts’ review.
4. Reliability is an issue in UGC, but surprisingly to us – less than we expected: 35% of them find the info. somewhat reliable, and 40% – neither reliable nor unreliable. All the others tend to find is unreliable.
5. In former researches we foudn that e-patients very oftern search for others. In our survey we found some support to these findings; 19% of women search for health info. for their spouse frequently / always, and some 40% do it sometimes. 17% search for info. for their child frequently / always and 26% do it sometimes. Women search mostly for themselves : 60% of them do it frequently or always, and 33% do it sometimes.

Please feel free to comment and feedback.

I would like to thank you all (and especially Susannah, for making this happen in the first place) again for your insights thus far.

EVERYONE: Please click through and read Lodewijk’s essay. I just posted the following comment on his blog:

I’m honored to have played a part in inspiring this post — I love the concept of the “me-patient” (and the “we-patient” too).

The word e-patient is indeed taking on a life of its own these days. It was coined by my mentor Tom Ferguson, MD, founder of the e-patients.net blog and I use it somewhat in homage to him. I also have found it a useful shorthand for a wordy concept: “adults with internet access who go online to gather health information.” Now, that may be just how *I* use it. Other people use it differently and still others refuse to use it at all. Reading the negative reactions to the word makes me think I should give it up. I’m seriously considering that because it’s starting to become a distraction from what is important and interesting: the people behind the label.

Thanks so much for this essay. When I posted those questions (and by the way, they are not mine but were sent to me) I hoped that they would spark a research conversation just like this one. I’m grateful.

Thank you Susannah. What I wanted to show is that even if you are the most vocal patient and even if you have been able to prepare yourself well, once you might find yourself within the process in many situation being a vocal (e-)patient simple doesn’t work.